Understanding the Experiences of Young People with Juvenile Idiopathic Arthritis

Adolescents and young adults living with chronic illnesses like juvenile idiopathic arthritis (JIA) require specialized care, especially as many of these conditions persist into adulthood. Recent presentations at the 2025 European Congress of Rheumatology explored how healthcare providers can better support this transition and understand patient perspectives.

A comprehensive systematic review involving 1,913 patients aged 11 to 30 years revealed that their main needs revolve around daily activity management, participation in treatment decisions, and social life considerations—including family and sexual relationships. These concerns highlight the importance of tailored support systems.

Further, the research identified additional priorities such as mobility, education, disease management, and future planning. Mental health aspects, including independence, emotional regulation, peer comparisons, and the emotional burden of disease, were also prominent. Notably, anxiety levels were higher among young adults with JIA compared to healthy controls.

A significant finding was the gap in mental health support, with many psychologists lacking specific training in JIA. Patients emphasized the importance of personalized, partnership-based care, with a shift in the traditional physician-patient role. Interestingly, these needs were consistent across different JIA subtypes.

The studies also underscored that current healthcare support often falls short, especially during the transition from pediatric to adult care, which can be a stressful experience. A large UK-based study called IMPACT engaged young patients, families, and healthcare providers to develop technological interventions aimed at improving communication, support, and understanding of medication side effects. Young adults expressed the need for better support in education, employment, and navigating healthcare rights, alongside clearer communication strategies.

The transition process is often marked by feelings of being unheard and having to repeatedly tell their story, leading to stress. Experts stress the importance of collaborative efforts to enhance the transition experience, ultimately aiming to improve health outcomes and quality of life for young people with rheumatological conditions.

These insights highlight the ongoing challenges faced by young individuals with JIA and point toward avenues for improving clinical practices and support systems. The goal is to foster a healthcare environment that is responsive, personalized, and supportive throughout the patient's lifespan.

source: https://medicalxpress.com/news/2025-06-exploring-patient-juvenile-idiopathic-arthritis.html